Pippa's Journey with a Brain Tumour

The boys and I have been overwhelmed by the sympathy shown to us in Pippa’s passing. Her life has truly been remarkable. What is also astounding is the enormous number of people who have viewed this blog. A beautiful tribute shrine has been set up at her Primary School. An article was featured in the local paper today

I have received many queries as to whether or not Pippa’s farewell will be public. Pippa never excluded anyone. A funeral will be held for Pippa in the Botanical Gardens, Warrnambool on Thursday 2nd April at 4pm. Yes, it will be an incredibly sad day but we will be surrounded by life and it will be beautiful.

She passed peacefully this morning surrounded, cuddled and held by those who loved her the most and whom she loved the most – James, Patrick and Mummy – whilst listening to her relaxing reiki music.

On Wednesday she had her teacher aide come for school at home and focussed on maths. She then went to school and after that to the hydrotherapy swimming pool for an hour where she was determined to walk to the hydraulic chair and get out of the pool all by herself on her own – “you can take the stairs mummy,” she said. She did. She played puzzle games with a special friend who called in for a surprise visit before dinner.

On Thursday it was, cold, wet and windy. Pippa, played games, did school at home for an hour again and then we spent the rest of the day watching movies and eating Easter Eggs. Other than being tired with a bit of a sore throat and a runny nose she was very happy. She ate, drank and communicated clearly.

Her rapid decline started at 7pm Thursday evening. She has been cuddled, held, massaged and kissed like never before. She has been cared for around the clock by her wonderful medical staff who have, at the same time, cared for James, Patrick and me. She has listened to chapter after chapter of the Magical Far Away Tree. Early in the day when she was able to, she watched episodes of Modern Family with James, Patrick and me lying together in bed with her laughing. She has listened to music. She has looked at photos of her kindred friend getting ready for her deb ball. She has not been left alone for one minute. Friday was also earring day – the first day she could change her earrings after getting her ears pierced on her birthday. She wore her beautiful flower ear rings that look so pretty. She has them in again today after making sure we put her real gold “sleepers” in for sleeping last night.

We have been able to say goodbye beautifully.

The last thing Pippa did on Friday evening was to open her eyes for the last family visits including a return visit late at night from Tony. “My Tony” as she called him when she was little. She also used her eyes and her right hand to communicate a few instructions to her doctors, nurses and me before going back to sleep.

Pippa is now climbing the Faraway Tree exploring magical lands. She will be “Legs Eleven” forever. She was beautiful in life and as she lies in her bed now surrounded by and holding her favourite teddies she is still absolutely beautiful.

I snap a lot of photos on my phone that I don’t use for anything except reference. They help me remember when the last time was that………… On the March long weekend (which is now nearly 2 weeks ago) Pippa’s improvement continued. We sat her on the floor to play some games, she felt a sense of achievement helping out with jobs around the house and she even tried her hand at table tennis. In fact, on flicking back through some photos recently I was struck by how normal this photo looked. At a quick glance, one could think Pippa is not dissimilar to any 11 year old girl sitting on the floor doing a puzzle with her cousin, hair slightly dishevelled from having been outside feeding calves after a visit to the farm. That’s actually precisely what I tell Pippa. She is normal. There is nothing not normal about her. Pippa is a completely normal 11 year old girl just like every other girl around her. What is not normal is the lump inside her brainstem but that is not a part of her. That weekend was the first time Pippa had sat on the floor since January 16th. A few days later Pippa took another downturn. This time though it was psychological. It was awful and I was not prepared for it. It came unexpectedly one night after she had had a most wonderfully fun day. Why not though? What normal 11 year old girl wouldn’t get upset, sad and terrified about what she faces. She has held it together for so long. That night we all cuddled and watched telly together with Pippa propped up amongst us. There wasn’t much sleep and fatigue the next day was nasty. I tried to pull her up and lift her spirits but I couldn’t. Her physical state seemed to decline with her mindset and I found myself worrying that the improvements had come to an end. I had to keep bringing myself back from a slump as well. “Don’t overthink anything, it is what it is, just live each day; each minute,” I would keep telling myself. I couldn’t devote much attention to the boys because Pippa needed me every single minute; every second actually. There was nothing we could do and I was feeling it also. We cooked, the boys were great, I rallied her and we went to school for a couple of visits – once for a fun afternoon tea and games day. There was a little light in her eyes then, but I could still see she had lost her Pippa spark and with it she’d lost some improvement. Having Pippa down got us all down. Well, me particularly – the boys were focussed on their school and sport which were good distractions having those routines for them. I am over having three wheelchairs in my house. I am over having to negotiate bathrooms that aren’t wheelchair friendly. I am over being housebound and not being able to simply get in the car and go somewhere. Anywhere. (For the past few years our March longs weekend have been spent at Robe with friends). I am over everything. The natural response to thinking that is to chastise yourself in a “careful what you wish for” type of scenario or have someone else (or even yourself) say it’s far better than the alternative. I’ve thought about that and it’s not far better than the alternative. The alternative should only be that Pippa is an 11 year old girl running around having fun, going to sleepovers, having weekend plays at friend’s, smiling, laughing, waving goodbye heading off to school and participating in all her sports. I was worried from this slump how she would deal with this week. Pippa’s friend has so beautifully been concerned wanting to work out how he could help so that Pippa wouldn’t miss out on school sports day. One night recently she had been telling one of the nurses how she used to win every race every year including the kinder year (and that year both the boys and the girls!) until last year when she didn’t. She was not mentioning this year. It was on Thursday. I mentioned it casually while we were clearing the table after dinner on Sunday night. She had surprised me by helping pack up – a little sign that maybe her mental state may have shifted slightly. Casually I said, “Pippa do you realise school sports are on Thursday?” She hadn’t. “Do you want to go?” I asked. “Of course” was her reply. I bent down in front of her, looked her in the eyes and very gently said, “Pippa, what do you see yourself doing on school sports day?” Without any hesitation she said, “participating in everything I can manage of course.” With matching enthusiasm James and Patrick immediately decided that they would join her; they would be her team and together the three of them would ensure that Pippa could participate in as much as possible. The week started well because firstly we discovered two players were visiting Pippa’s school. That got her happy – she was excited. Off we we went arriving early; Pippa ensuring we wouldn’t miss out on one minute. Pippa wore her Geelong Cats jumper that had been signed and messaged especially for her by her favourite player, Number 4, Andrew Mackie. The two players who visited the school were given another old jumper to sign and both of them laughed agreeing they would not touch the treasured one! We made quite a team, Pippa and I, doing football drills using skills I certanly didn’t know I had! Next was school sports on Thursday. Pippa was up early ready to walk to school with the boys and me and she wasn’t planning on having a short day either – she was staying as long as the sports were! The three of them devised that they should bring their own (slightly modified) shot put and discus – Pippa had been practising in the lounge room. Pippa participated in one way or another in all the field events. For the track events she handed out the paddles to the place getters. James and Patrick were indeed creative in how they tackled each event and her classmates were simply beautiful. It was a sports day that completely encompassed the true meaning of participation and sportsmanship by everyone.

Heading to school sports day

BYO “discus” that did end up in the creek once on the walk to school

Egg & Spoon Race

Discus

Volley Ball

collaborating for the vortex throw

1st, 2nd, 3rd

Getting it all organised

1st

For the first time since last Wednesday Pippa today seems brighter and has a bit more spark in her eyes. She has had an art class which a friend has started doing with her for therapy. Lucky “Sis” Marli came over to pick up her birthday card and was the recipient of an impromptu portrait gift! We finished the afternoon off with a relaxing foot spa whilst eating blueberries.

Happy Birthday Marli

Learning to Draw Portraits

Rubbing off the chalk smudge

Footspa

The power of the mind is incredible. Today was finally a good day and it was brought on, of all things, by two fabulous days of sport. That is so very Pippa.

I was originally going to put this post on the end of the last entry, but it needs it’s own post simply because in the future I want to make sure I don’t forget about it at the bottom of a page.

James and Patrick continue to step up to the plate and each day fulfil their role of the world’s most loved and loving brothers who help in every way. Just like me their exhaustion and patience is tested. Just like Pippa they get sad and frustrated. Their love for their sister, however, never falters. Day after day they display their incredible skill of bringing Pippa up if she is down; making the time they have with her the best it can be. Their creativity flows and they lift Pippa’s emotions turning the simplest of situations into shrieks of laughter. Every little girl needs to know she’s adored by her big brothers.

I’ve been reluctant to write a post simply because I’m feeling like I might jinx us.

We had mostly bad days across November, December and January and any days that were better didn’t last very long. Even on good days the bad ones lingered in the background like a dark shadow on a cold winter’s night. During the treatment in Melbourne I was told 3 times to be prepared for the worst. Being told is one thing, but actually feeling it is by far another thing altogether. I haven’t counted how many times since we returned I have “felt” it; it’s not something I wish to count and sometimes the feeling wouldn’t leave my heart. Pippa always pulled through and I could let myself take a breath and would try and push the feeling away for a little longer.

That’s why on the day Pippa went to Tony’s Sungold Field Days I was thinking the good day would stay with us for only a few days. It was 2 days before her birthday and I assumed she was rallying herself and finding all of her inner strength in preparation for turning 11. Being in the wheelchair is tiring enough for any outing, but bouncing around over acres and acres of tracks through paddocks to see everything she wanted to see meant Pippa came home and fell asleep utterly exhausted but not before telling me how much she loved me. It was the first time I had heard her the sound of her voice in over 2 weeks!

After the field days and Pippa’s birthday I was waiting for the decline to come again. It didn’t. Instead since the 11th February we’ve now been seeing improvement. Small Improvements.

To break it down…………

She couldn’t drink; now she can drink milk, freshly squeezed orange juice and she’s even managing some water.

She couldn’t chew or swallow anything other than jelly and ice cream; now she can manage small amounts of foods that I either make or adapt for her and there is definitely a chewing motion and tongue movement. I still have to carefully monitor choking with both eating and drinking though.

Although I didn’t realise at the time, now that it has returned, I know that she had lost, to some degree, her sense of smell and taste.

Likewise, her sense of touch is now different; she used to know that her feet were cold but for many weeks she lost that sensation; now she can recognise that again.

The TV is no longer up to detrimental volumes for the rest of the family so her hearing must be somewhat better. We still need to speak directly to her and eliminate background noise or other people’s voices so she can hear properly.

She couldn’t move her left hand, arm or leg or shrug her left shoulder; now she has a small amount of movement in each of these areas.

Pippa had no trunk or neck strength, now she can manage some level of support to move and hold her body and head. Her neck gets tired and aches if she’s using it for too long but she recognises when she needs a rest (unless of course she’s determined to push through and finish something!)

She couldn’t bear her own weight when standing; now, whilst she still needs to be held and supported, she can weight bear ever so slightly and move her legs (sometimes her left one freezes up)

She couldn’t speak, move her tongue or make a sound; now she can formulate words, make sounds, speak sentences and of course poke her tongue out. It’s quiet, sometimes more breath than voice, and we still need to concentrate very hard to understand what she is saying but she can, at times, have some clear short phrases – my favourite one of course which I can always hear clearly is I love you mummy.

She was no longer able to hold things in her right hand and some days even touching the ipad to communicate it was difficult to hit the correct letter; now she is holding a modified spoon at dinner time if she’s not too tired and recently at school she held a texta to draw a dolphin.

Pippa is comfortable and is no longer on any pain medication.

Finally, Pippa is singing! It’s not singing that we can necessarily hear, but her music plays, she can mouth the words (sometimes with a little sound) and she is enjoying it.

Whilst this is all fabulous, it feels much like waiting for a bubble to burst. Instead though, we keep living each day in the moment, one day at a time. Pippa is going to school for short periods most days and some days school even comes to her. The grade 5/6 students now have a laptop program which has given Pippa incredible enthusiasm for her work and the night she received it she spent over 3 hours doing homework to complete her first project – one finger typing, with a slow moving arm but it was a maths project so she was determined. We try and focus a lot on maths as it’s Pippa’s favourite subject, but it’s also great therapy for her brain. Usually it’s just Pippa and I walking to school but occasionally we have a visiting entourage that comes to the classroom!

We have had a trip to the beach to try out a chair that can go in the water. At the same time, it was a good excuse to do a “patrol” in the ATV! Pippa now watches the weather reports closely to see when the next opportunity to go to the beach will be. Of course next time she wants to go out deeper than just half way up the wheels and she’s started asking whether maybe one day she can manage to lay on a board!

Whilst Pippa still gets sad and very frustrated with everything that is physically different from the girl she used to be she is exactly the same Pippa on the inside with her beautiful, engaging and exuberant personality. It’s my job to hold her tightly when she’s sad and to be supportive and encouraging of all those great traits she hasn’t lost. Pippa has learnt a few magic tricks and enjoys baffling everyone with her talent. All the tricks require the use of her brain and her memory both of which function completely normally. Her physical ability to play games has improved again and she likes to make people laugh by introducing them to the fun game of “Fibber” with her noses already on! The hysterical fits of laughter take a while to subside before the game can start.

Why is this improvement showing so long after we finished our additional treatment that was initially thought not to be working? And why has it come after such a long and drastic period of decline? I don’t know. Nor can anyone give me much insight. Regardless, it is what it is. I can’t change, worry or over think it. What I can do though is be respectful of Pippa and this period of time. It would be easy to sit Pippa in her recliner chair and watch TV all day but that’s not her. Watching TV is now “resting” after periods of hard work on her part – school, physio exercise, homework, sitting on the daybed outside, outings in the car (she still needs to be lifted in and out) or in the chair. I don’t know how long this improvement period is going to be for or whether it will continue, plateau or decline. I have started to do physio with her. I have had her capabilities assessed and our creative physio friend has devised some great fun activities that will hopefully compliment her current situation. I’m not giving Pippa false hopes but I feel it is my duty to capitalise on any movement her muscles can achieve. I also make sure that across the day her food intake includes something from all five food groups. In fact, if I don’t Pippa reminds me! Likewise, she ensures that she does her exercises and stretches. Even if I think she’s tiring she won’t stop until she’s not only done them all but done them all well.

These are all small but significant improvements. We are enjoying them and hanging on to the roller coaster for longer.